Monday, August 29, 2005

The memorial service was lovely and the tribute to Kathy was very heartwarming. Karyn, Cindy and Ginger all got up to speak (as did her brother, Tony) and I can't believe that they were able to keep it together. I know that people talk about there being a sense of "closure" once the funeral takes place (I've even said that), but there really isn't, is there? Just because you spend a day speaking loving words and looking at pictures and greeting relatives you haven't seen in decades (or ever met) and friends paying respect and listening to your loved one's favorite songs (or songs chosen at random by someone trying to help out) and drinking away your sorrows and crying, crying, crying and finally crying one last time until you're too exhausted to keep your eyes open doesn't make the pain go away or the fact that your mother, sister, aunt, or best friend died and you'll never be able to hug them again in this life.

A part of you is missing now. And even thought my situation with Matt is so very much different than what these women are going through, I still understand a little of the pain.

Now begins the difficult task of returning to whatever is expected to be normalcy in their lives. But, there is no normal anymore because those frequent phone calls and the visits once a month aren't going to happen ever again. And that, I feel, is the most devastating part about death. The finality.

You want to know what scares me the most about Cystic fibrosis. It's that finality that looms over ever victim's life. That finality that pushes you harder to try and make things better and that finality that leads to the guilt and shame when you aren't trying hard enough.

Kathy was a remarkable woman, more so than I ever knew. And in her death she was watching over our family in more ways than one. On Thursday we were informed that we were to inherit her car. I was shocked and felt so blessed. I have been worrying so much about my car giving out and the idea of having a car payment is so daunting. This was her first gift to us over the weekend. The second came on Saturday night returning from Lakewood. Our van began to make some strange noises and didn't feel like it was running properly. Just as we pulled into our drive way, it began making a terrible grinding noise that could only indicate trouble.

Sure enough, the van broke down on us Sunday morning just around the corner from our house and it needs a new transmission. Expensive? Hell yes, kimosabes. But can you imagine what it would have been like to have our car breakdown two hours from home, at 10:00 pm on a congested freeway and two sleeping kids in the van. Kathy guided us home that night and made sure we arrived safely. I know this sounds all new age touchy feely, but her spirit was with us. There is no other explanation in my mind.

God bless Kathy wherever her spirit is roaming now. And I hope she bumps into Matt up there. I know he would like Kathy.


Friday, August 26, 2005

Tomorrow is Kathy's memorial service and I feel anxious about it. I think it's just that I know there is going to be a lot of tears and I'm unsure how well I can comfort someone in that situation. I know to offer love and hugs, but that sometimes doesn't feel like enough. I have to get up and run 4 miles tomorrow. My end goal and the reason I'm running is of great importance, but right now, running does not feel so vital that I need to write about it.


Thursday, August 25, 2005

It’s an obsession. You’re driving down the street and you begin to wonder how many miles it is from this street sign to the traffic light. How long would it take to run up that long hill near your daughter’s school? And you think about how cool it will be when you actually do run that hill. You worry about getting new shoes and when you’ll be able to afford them. You question the strength of you knee and back not because you’re worried about being able to walk in ten years, but because you’re worried about finishing the run. You’re bummed when your MP3 player finally breaks down because you look forward to the blending of reality (running) and what’s going on in your head as you listen to those songs. Weights star to pop back into your head and you contemplate pulling out the dumbbells one more time. Along with those 40 crunches you do each morning, the Yoga tape suddenly get dusted off. And then there’s what you eat. You make goals for yourself. Limited coffee. No cream (yeah right). No Coke (a tough one, but doable). Not too many snacks and more fruit in your diet (because there are few vegetable your really like). The run becomes a part of your life. It is an obsession.

It’s an obsession. How many enzymes did I just give him? Is that enough? What if he eats less than I gave him? What if he eats more? I wish he’d eat more because I really want him to gain weight. What exactly is he eating? Chips again? Can’t he eat a yogurt instead? Speaking of yogurt, how can one kid put down four Gogurts at once? Why doesn’t he like more foods? Eat your spaghetti. You have to eat it, we just gave you enzymes. You need to eat that food. It will help you grow. He’s drinking milk again. I know it’s good for him, but doesn’t he need something solid in his tummy. You’re so glad that the enzymes situation seems to have been figured out. It took 3 and a half years. But he now seems to be gaining weight on a regular basis. You worry about how much fat is in everything. And when you do something knuckleheaded like going to McDonald’s without the enzymes, you feel like a terrible parent. Shouldn’t I know better by now? What’s the matter with me? It’s all you think about when you’re making dinner or serving a snack. You want to be completely in the moment, but there’s always that little voice, calculating the number of enzymes. It is an obsession.

Tuesday, August 23, 2005

Ran yesterday and I was surprised how easy it was to wake up at 5:30. Scary. I'm slipping into my groove so soon. This is a pleasant surprise. Spoke with Cousin Dave this afternoon and we've brainstormed on a couple of new ideas for fundraising this year. Our conversation reminded me that the web page needs to be updated. I'll get on that tomorrow.

I guess it's time to get to work on my letter. Every year it gets more difficult to figure out what I should say. For a man who has so much time and so many words swirling around in his head, it sure is hard to find the right words.

The kids are in bed and I have to check on some things for Karyn. I'm helping out for the memorial service this weekend. Nothing big, but I need to get to work now.


Sunday, August 21, 2005

Julie and I watched a remarkable documentary on The Learning Channel called “The Boy Whose Skin Fell Off”. Remarkable not because it was some boring scientific expose on a rare genetic disease called ( ), but because it showed how great the human spirit can be. The subject of the special, Jonny Kennedy, was 36 when he died from this disorder. Here is the synopsis from TLC’s website:

Thirty-six-year-old Jonny Kennedy was born with a terrible genetic condition called dystrophic epidermolysis bullosa, which meant that his skin literally fell off at the slightest touch, leaving his body covered in agonizing sores and leading to his final fight against terminal skin cancer.

In his last months, Jonny decided to work with a filmmaker to document his life and death. The result is a film that tells the uplifting, confounding and provocatively humorous story of an amazing man on a mission to make his final days on earth memorable

While it did show the horrific effects of this disease, it also showed this man trapped in a boy’s body accepting his fate and living each day to fullest. Yes, it was sad, but Jonny was a wily man and the special was full of humor… lots of laughs. I recommend everyone trying to watch this special. Be warned, though, there are a couple of graphic scenes showing his sores.

After it was over, both of us couldn’t help but feel there were some parallels to what has happened with Karyn’s mother. And the life affirming message that Jony gives is one of hope. That there is a better place after this world. How else could one endure such pain and survive. I know I thought of Jacob many times during the viewing. I pray that he never experiences pain as grave as what we saw. I hope that he has a relatively normal life and lives to be an old man. We don’t want him going through life thinking that his is limited because of his illness.

Appropriately enough, yesterday was the official day of my marathon training. I ran two miles in the morning in a little under 30 minutes. I am using a 3/1 run/walk ratio. So far, I don’t feel much pain in my knee and my back pain seems to have subsided for the time being. Knowing that I’m going to commit to this race again has cleared my head, in a way. Suddenly I’m thinking about what foods to eat. How to limit my snacking, and when I should be stretching. And, of course, I’m thinking about the letter I have to write.

This has been a hard year for us. Two prominent deaths. I thought about Matt again today. I read an article that mentioned Dylan’s “Love Minus Zero/No Limit” and I decided to throw on the “Bringing It All Back Home” LP I have in my closet. As the vinyl crackled and the songs played back, there I was again, in my parent’s basement back in ’92.

For a week straight, Matt and I hung out down there, drinking and listening to Dylan music. This record in particular was on a lot and just the sound of those songs brings back Matt to me. I guess Matt embraced life. That’s what I’ve been told. Personally, I thought he was reckless after he was diagnosed with diabetes. But I didn’t really know him for that period of his life… his last few years. The Matt I will remember is the man who taught me to play “Book of Dreams’ on the guitar so I could serenade Julie and propose to her. He will be the man who stood by me in my most difficult times of childhood and adolescence. And he will be the man who guided me through some dark, uncertain times before I met Julie.

Steve called again tonight. I feel like he and I talk so much more than we have in the past. I am so glad about that. I think Matt’s death has reminded us of how fragile our lives are and how important it is to maintain a degree of connected ness with the people we love. I wish I’d been able to reconnect with Matt.

The last night he was in North Olmsted back in ’92 before he moved to Seattle, we met at some shitty dive bar to have drinks. As usual, I played DJ and selected some songs I thought fit the spirit of the night. I found a live version of Springsteen’s “Bobby Jean” and those lyrics seem fitting now:

“Well I came by your house the other day
Your mother said you went away
She said there was nothing that I could have done
There was nothing nobody could say
Me and you we’ve known each other
Ever since we were sixteen
I wish I would have known
I wish I could have called you
Just to say good-bye, Bobby Jean”

How does Matt tie into the first item of this entry? I’m not sure. He died alone. I guess that’s very sad to me. He loved company. He loved people. But I’m not sure, in the end, he loved life. I don’t know.

I believe we’re all here for a purpose. Can we teach each other something? Can we help each other? I hope I can help people continue to understand about Cf. I hope I can help a cure be found. But I believe my most important purpose is to guide my kids to become better people than I ever will be. To make them better humans so that the world can become a better place.

Man, does that sound corny.

Thursday, August 18, 2005

Thursday again and it's been an eventful week. Sophie began the first grade yesterday and I am proud to say that she did fine. Julie is really sad that Sophie will be gone most of the day. But Sophie, so far, has been doing fine with the transition. Then again, it's only been two days. The four of us went to her new school together yesterday. I will always remember the ride up to the school and Elton john's "Tiny Dancer" playing on the radio. I feel like she's growing up so fast. Then I'll come home to find her and Jacob running around like maniacs. These simple reminders are all I need to let me know that she's going to be a kid for a while still. But I need to record these moments in my brain.

Jacob has been growing, too. We have been pleasantly surprised at how full his face is becoming, and that he fits in 3T clothes, even outgrowing some of the three size shirts he wears. Although he is still shorter than kids his own age, I don't feel that it's so noticeable that people may comment. We've also noticed that his appetite is increased as well. It may be due to an increase in his medicine, Megesterol. Could it be that we finally have some control over his enzymes? Let's hope so. But, he isn't growing fast enough for himself. Jake wants to be bigger. He wants to be a grown up. Or at least as big as Sophie. He cried yesterday because he was going to miss her while she was gone all day. Luckily, Jules has some fun activities planned for him throughout the Fall.

I began running this week, although the official half marathon training begins this Saturday. Ran 2 miles on Tuesday and two more today. I felt like I had good form. Was really winded toward the end of the run. Man, I'm out of shape. I look forward to training for the half. There’s a lot less pressure, and I know I can finish this race. Beth still wants to come out and participate with me. I think that will be great. And Seann said he would help fundraise, too. Maybe we could actually raise close to $15 thousand this year. That would be awesome.

All of the good feelings this week have been tempered by the fact that Kathy passed away on Saturday. While it is easy to say that her passing was a blessing to be over the horror of her cancer, the pain is still there. Karyn, Cindy and Ginger have a difficult time ahead of them. This is not something that will dissipate in the air. Whatever we can do for them, we will be there.

Julie went down to Lakewood on Saturday and she came back shell shocked and exhausted. She couldn't believe how withered Kathy was. The disease ate away at her body. But she was a hell of a woman and I know that there was no way it could tear into her soul. When we saw her several weeks ago, Kathy was as spirited as I'll always remember her. And because that was my last image of her, I'm having a hard time grasping her death. Am I numb because of everything I went through with Matt's death earlier this year? It just doesn't seem real. I know that when the memorial service is held next week, it will definitely sink in. Bless her soul.


Thursday, August 11, 2005

It's been a long week and I haven't run or walk at all. Karyn's mom health has deteriorated and we're not sure how long she has. Jules and I have tried to help out as much as possible. The best that we can do right now is watch Max, Zach and Megan. Those kids were at the house Tuesday, Wednesday and today. I took the day off yesterday and we all went to the beach. I am amazed at how these kids are going with the flow. Though, I'm not sure how aware they are that their Nana is dying.

The specter of death has hovered closely this week. Tuesday the 9th would have been my oldest friend, Matt Brookshire's birthday. He passed away in February and I have been dealing with that situation all year.

I know I have spoken about Matt in the past and his death came as a shock to everyone who knew him. The two of us went so far back, I don't recall how we met. I look back at pictures from 1st grade and there we are, the two of us in the same class. How did we meet? What made us become friends? And what made the friendship so strong that it endured for over 30 years. I miss him dearly even though we were out of touch for the last two years of his life.

Not a week went by that I didn't think about calling him to see how he was doing. Sadly, I had lost his phone number. Then, last Christmas I gathered the courage to call his mom and ask for his address and phone number. We had sent Christmas cards every year, and I sent him the Cf Marathon letters, but I never heard back. Still, I never received those letters and cards back from the post office. I thought that in a small way I was trying to stay in touch, even though it wasn't as personal as I would have liked.

When I called Mrs. Brookshire, I discovered that he was, in fact, still living at the same address. I felt angry back then. Why hadn't he at least sent some sort of letter? I didn't expect money.

I only have the words of his brother as to why Matt never called or wrote. I don't care to go into that because there's no point. Matt was an individual with his own remarkable view on life. He wanted to be Hemingway. Bukowski. Henry Miller. His life was his novel, so to speak. But Matt also suffered from diabetes and for a good portion of the time he had diabetes, he did not take care of himself. He drank a lot and like to indulge in good food. He didn't want to give up the pleasures in life. At least, that was the way he was the last time I saw him.

What he was like his last two years I'll never know. We had a very private relationship and we shared secrets. And he will always be a brother to me. His passing has left a void in my life. I am not sure when or if I will ever be over his death. If he had this kind of effect on me, you can imagine how his mom and brother's lives have been shattered.

Wherever his spirit is roaming, I know he is at peace. His influence is felt in everything I have written so far. King's Highway has a character based on him. And my latest script, Blood Brothers, is really about the two of us and how we grew apart.

Happy birthday, Matt, wherever you are. I love you, brother.


Sunday, August 07, 2005

The back is finally feeling good enough that I'm going to get up again tomorrow and walk. I'll try to put in a couple of run cycles just to test everything. But I'm going to run the half marathon. It's already in my mind that I'm going to do it, so it's just a matter of when I'm going to run full time.

This was a great weekend. Jake and I spent a lot of the day together while Julie took Sophie shopping for new school clothes. The two of us did some errands, with was awesome. I remember having days like that with Sophie and I wish I had more with Jake. I’m sure they will come. As for Soph, she's just growing up too fast. 1st grade, man. Blows me away, know what I mean.

Found out my dad is having an angiogram sometime when he returns from his Ohio vacation. Budd told me that today. The fact that Beth told him, and I spoke to her for a half hour and it never came up was a little weird. But, par for course with our family. I'm a little concerned but will wait until I get to speak to him this week.

Note to self: Get dad a birthday present. And try to get something besides a book, dude. I know he likes to read... but every Father's day and birthday? Time to put some more thought into it. Of course, his birthday was last week.

Karyn's mom is doing worse. The brain tumors are bearing down on her. We're not sure how long it will be. Even writing that feels like a betrayal, like giving up. But I don't want her to be in pain. Tough, tough situation. I wish I could do more them. Julie has been such a good sister to Karyn. This morning Karyn called and just started telling me what is going on. That was a first since Kathy was diagnosed. Usually she would ask for Jules. I think Karyn just needed to unload right away and I was the one who answered. I felt pretty useless. Lots of "I'm sorry, Kar." Then I asked if talking to Julie would help and she said it would.

It doesn't seem right that life should end in this messy fashion. Then again, we live with this disease in our family and it doesn't seem right that a child should have to suffer from Cystic fibrosis.
Got a call from Beth today

Beth called and we chit chatted for a few minutes until she proposed the idea that the two of us relay the marathon in January. She would walk a half marathon and I would run the other half. I think its an awesome idea. I think the two of us could raise a lot of money and really raise the interest in CF. There are some logistics that need to be worked out (I'm not sure the Carslbad marathon allows a relay team) but I'll figure it out.

Having someone else from the family there, participating in the race, that would be so inspiring to me. I know that Julie would jump in if she wasn't watching the kids. I tell you, I'm pretty excited about this at the moment. I hope it works out.

So far the weekend has been very nice. Jules worked today while I cleaned the house. We had the Inmans over for dinner. I really like them. I wish we hung out with them more frequently. After dinner we headed over to the park for a free concert by a Zeppelin cover band. These guys sounded like the real thing.

I know that these mundane little updates don't do much for anyone hoping to get the goods on my training. Truth is, I haven't done anything since Wednesday. But the back is feeling a lot better. So, I hope that by Monday I can at least get up and walk in the morning. Let's keep our fingers crossed.

That's all for now. It's late. Actually it's Sunday morning after midnight.



Friday, August 05, 2005

The back is feeling better. I think I'm going to run the half marathon.

I know. I know. What about the legs? I don't think a half will hurt quite as much. And I do like running.

The training isn't as intensive. And I know I can finish.

My mind is a little all over the place. I'm worried about Karyn and her family. And it puts things into perspective, you know? I also just read about former NFL quarterback, Jim Kelly (Buffalo Bills) and his son who passed away at 8 from Krabbe disease. I had tears in my eyes just imagining the sense of loss they must feel.

All of the stupid shit we worry about in life, the stress and the worry. Why? Especially when it's job related (in particular entertainment jobs). These people who get so worked up about coffee and how they are perceived. It's b.s. people!

Children are dying from diseases that have no cures. And the families of these children have to find a way to go on and live with a huge pit in the stomachs.

Christ, if I could find a way to make everyone feel this way. To make them understand. That's what I want to do so badly for Cf. But I feel like I'm not making any progress. I feel useless.

8 years old.


Wednesday, August 03, 2005

2nd day of my walking training and my back is killing me. Not quite sure what I did over the weekend. Swimming too much? Carrying Megan up and down the stairs? Slouching on the couch while I watched HBO late Sunday night? Whatever, I'm in pain. Sweet Sophie. Last night I limped into the house and she said that something was wrong with her heart. I asked her what and she finally blurted out that she feels bad because my back hurts. What a kid.

I don't want to complain. I know people who are in greater pain than me. Anyway, the walk this morning was nice and I feel better than yesterday morning. I think the farthest I've walked is three miles. I still get the urge to break into a jog, though. If I could feel confident that my back wouldn't feel like this every week....

Actually, I just got off the phone with Robert Mills, my illustrious marathon trainer. He suggested I switch to doing a half marathon. The idea is very appealing. I really enjoy running half marathons; it's just enough to make you feel like you've run pretty far, but not enough to kill you. I KNOW that I won't be doing another marathon.

My one trouble with walking a marathon is that it will take all freaking day. Seriously, I estimated that I would be walking for 8 hours. Again, a small sacrifice for what I am doing (raising money to find a cure), but I'm not sure if I'm up for 8 hours.

I have a lot to consider in the next couple of days. I think a lot will depend on how my body feels by the weekend.

Whatever I decide, Julie has expressed her full support already. I can't believe she is willing to go through with all of this with me again. She's a one of a kind.


Monday, August 01, 2005

My first official day of the marathon walk. According to the training schedule I printed out for myself, it is a rest day, which is convenient because I did not walk this morning.

We spent the weekend at Budd and Karyn's watching Megan. Budd took the two boys on a camping expedition while Karyn spent time with her mother. Karyn's mom is terminally ill. She has cancer. The other day I actually said to myself that she is dying and it seemed so much more real to me. Saying "terminally ill" gives the impression that she's going to get better. She is not.

We went to see her last weekend and she seemed to be having a good day. Kathy has always been like a mother to us. When Julie and I moved west, she took us in and immediately began calling Julie her daughter. And when she tells people she has grandchildren, she tells them 10 (which includes Sophie and Jacob). I can't imagine the grief that Karyn and her sisters Ginger and Cindy, are going through. I don't want to know that kind of sadness.

Needless to say, we are helping Budd and Karyn in any way we can, which includes spending the weekend with our niece.

As you can see, I've changed the name of the blog. The Long Road sounds a little more apropos, since this will be a long journey. The quote by Lincoln is something I found on the web. I'm going to try and make the next several months a little more interactive. We'll see.